[Not So] Goodnight Moon

Dear Nolan, 

You are three. You are wearing underwear most of the time with no accidents. You use the toilet. You use a normal fork and spoon. You love bath time. You can put your shoes on and do so many other great "big boy" things. But why oh why do you HATE sleeping? You were always a great sleeper. Then you turned two and I think someone told you that you could test your boundaries. I'd like to find that person, who was it? You've been taking Super Batman Juice [Melatonin] for a month now, some nights are great and then there are those nights that I should probably not repeat. Remember, if you don't have anything nice to say...don't say it. You know that Daddy is a pushover to letting you sleep in bed and you have perfected your speech to him so you can sleep with us. Ugh. This morning my alarm was warm urine all over my back. Thank you for that. I do love you and everything about you, but we need to keep all urine to ourselves. Please sleep in your bed tonight. We have made your room so nice and cool [seriously, I'd like to sleep in there] but you hate it. You come out of your room every 15 minutes, "Mom, I need chocomilk", "Mom, I need to go pee pee", "Mom, I need to give you a kiss". You're really good at what you do. But please...for my sanity [which ultimately affects your sanity] GO TO BED...IN YOUR BED! 

Love, 

Your very sleepy and slightly annoyed Mommy

PS:

Please stop falling asleep on the couch right before dinner because you refuse to take a nap. It's impossible to wake you up and when you do wake up, watch out. In those times, I would like to be hiding. 

Losing It

Surprisingly...this post is not about my kids. It's about me.

I need to lose weight. A lot of it.

I've never posted anything like this before but I need to be held accountable so why not here right? I will probably be disabling the ability for this to post to Facebook after I post things like this in the future, because really...I don't want everyone knowing about my weight issues [maybe I will after I lose a zillion pounds].

My roomate who cooks amazing meals will be leaving tomorrow, while this is sad I am excited to start my weight loss journey which will be much easier without chicken enchiladas on my table and large amounts of spaghetti and sauce.

I recently bought an elliptical and put it right in my living room [thank God we bought the house with the bigger living area], and while I use it...I don't use it like I should. Obviously. I also recently bought a Ninja blender and protein powder. I also love Jillian Michael's "30 Day Shred".

I've done two 5k's [whatever, I didn't run but I still did it right?], but I would LOVE to get to the point of even thinking about doing a marathon. I like running more than most people, so I guess that's a good thing.

I have cut out sodas and switched to sparkling water. Didn't you always know that I was high class like that? I like to lift weights. I love to see my calories burned go up and up as I work out. I very rarely do fast food and if I do I go for a lighter option [alright...most of the time...dammit].

I need some awesome support and any tips or tricks you all have found to be helpful on your journey. Please help me along, hopefully I will be brave enough to post my good and not so good days.

I can do this. I will do this.

>Find more health and fitness advice at Greatist.com, one of the best fitness blogs online.

Growing Pains

I can't believe how big my boys are getting. I feel like they were babies just yesterday. They are growing and becoming more independent which is great and all, but sometimes I just miss the baby days.

Nolan...
* is almost completely potty trained. He goes out in his underwear instead of diapers, he wears underwear at night and hasn't had ONE accident. I can't even believe it. I haven't been the most strict mom on potty training with him, probably because in all honesty the diapers are easier for me when we are going to and from therapies and doctor appointments constantly throughout the week. My bad. I actually started him on the potty when he was a year and a half old, that was when he first went pee pee in his little toilet. I thought that would be it and we were on our way to underwear. Clearly I was a very wrong mommy with way too many dreams. At least I was able to introduce the whole idea to him BEFORE Kaleb was born, after he was born it was unfortunately put on the hypothetical back burner. But not anymore. He has taken it into his own hands and done amazing at it. My little man is not so little anymore.
* talks in complete sentences...well, most of the time. It's really weird to have your child come in your bathroom and say, "Uh, Mommy...I going to use your toilet. I going to go pee pee and poo poo". It's like having an adult room mate that you can talk with but yet they make an unimaginable mess in your house and pee on your toilet seat. So odd.

[Nolan and his plane that he made out of small butter packets that restaurants give to you. AMAZING!]

Kaleb...
* is speed crawling everywhere. It's insanely difficult to keep up with him. No matter how many times one vacuums the carpet, he WILL find some itty bitty thing on the floor and put it in his mouth. He also gets into the kitchen, opens the doors and pulls out everything. I thought about baby proofing but I'm so happy that he can even do this that I refuse. I just hide all of the unsafe things and let him have fun. It's all so tiring but I am so thankful for every little thing that he CAN do, I don't worry about how frustrating it can get constantly pulling stuff from his mouth or putting things back in the kitchen.
* is going to be two in just a few months! I can't even believe it! He can crawl, pull up on his knees, stand with help, loves the water, does great in his therapies, and is even getting two molars (which haven't been so nice to him). He only has 6 teeth and people still ask me how old the baby is when we go out but he's so much more than "just a baby"!

[An older one of Kaleb when he first started exploring the floor...this was printed in the newspaper]

Alright, enough for today. I've got to keep up with this thing more often. I love being able to look back through my pregnancies with the kids and especially during the uncertain months while I was pregnant with Kaleb and his diagnosis.


I can do this!

Well Hello There

I'm back. At least for now. I can't even remember the last time I blogged but it's been a rough time since then. I'm slower than most to getting used to new situations and during my slow-ness...everything goes by the wayside.

It's probably safe to bet that in the past couple of months my house been a complete wreck (along with my hair), laundry hasn't been done, and dinners haven't been cooked.

In May Kaleb was hospitalized for sudden aspiration possibly due to neurological decline and had to have surgery to place a feeding tube and Nissen (along with surgery on both feet).  Because of this, our lives and home have been insanely disrupted. But...I'm back. I'm trying to pull it all together. My house hasn't burned down and the kids are still alive (I should win an award for this).

I know you all are in tears to know that I'm finally back and that I was missed so much...what can I say? :)

I can do this. I can pick up the pieces (and the crap all over the house) and dust myself off. I must blog more, even if no one ever reads this. Even though our family is going through unbearable situations at times, I want to remember every day, appointment, surgery, hospitalization, first words, therapies, and the crazy stuff that my nearly 3 year old Nolan does. It may be painful now, but in many many years I will have this to look back on and I just know I will laugh my ass of.

-E

My Nolan

I think everyone should know that Nolan thinks his name is "MyNolan". I guess it has to do with me always calling him my Nolan...because well...he's MY Nolan. This has nothing to do with my post but it's the title so I figured I would tell you.

So if you ever hear Nolan tell you, "My Nolan wants milk"...now you know what he's talking about.

This post really is just about the funny things that Nolan says. So I'm going to try to keep a running list during the day and then post at the end of the day. Unfortunately, I just got this idea so I only have one so far. But one is better than none, especially when it has to do with my Nolan. I want to remember these moments and these conversations, because if you know me...my memory hates me.

__________________________________________

Nolan: Playing loud music and singing in his mic on his new keyboard
Nolan: Mommy dance and sing.
Me: I can't anymore because my head hurts.
Nolan: Let me fix it. He then proceeds to hit my head several times.

__________________________________________

{note: We recently got a new puppy and named him Tucker.}
Tucker: pees on the floor
Nolan: Mommy, look at [what] Tucker did.
Me: goes to look
Nolan: is peeing next to Tucker's pee spot
{maybe one day I can look back on this and laugh, until then...I'm just annoyed}

Kaleb's Song

The other morning I was driving to the hospital thinking that Kaleb was about to have his bone marrow aspiration and I was really worried. I heard this song for the first time that morning and I started crying. It fits Kaleb so much and has some funny parts...just like Kaleb. :) He is truly a fighter and has been through more most adults have been through in their lifetime. 

Fighter - Gym Class Heroes

Just waking up in the morning
And to be well,
Quite honest with ya,
I ain't really sleep well
Ya ever feel like your train of thought's been derailed?
That's when you press on - Lee nails
Half the population's just waitin to see me fail
Yeah right, you're better off trying to freeze hell
Some of us do it for the females
And others do it for the retail

But I do it for the kids, life threw the towel in on
Everytime you fall it's only making your chin strong
And I'll be in your corner like mick, baby, til the end
Or when you hear a song from that big lady

Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?

Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter

And if I can last thirty rounds
There's no reason you should ever have your head down
Six foot five, two hundred and twenty pounds
Hailing from rock bottom, loserville, nothing town

Text book version of a kid going nowhere fast
And now I'm yelling "kiss my ass"
It's gonna take a couple right hooks, a few left jabs
For you to recognize you really ain't got it bad

If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure

 Dennis' work has been so supportive, I almost fell out of bed when I saw this. <3 you all

Kaleb's second hospitalization, EEG time

The morning of Kaleb's third admission, he was breaking my heart. 

The rash that sent me over the edge and straight to the ER, doesn't look so bad here. 

One of my closest friends, Janet, showers us with treats when we are inpatient. Not sure what I would do without her in my life. So sad she and her family have moved to Lake Tahoe, we miss them terribly. 

This is what exhaustion looks like. 

Look who's pulling up to his knees!

My bestfriend's mom took such good care of us by sending us this HUGE basket, yum!!

Kaleb had a few visitors, this is Terra. This was one of Kaleb's bad days so he wasn't too happy with anyone holding him but Daddy. Thanks Terra!!!! <3

Sponge bath complete and found a high chair int he hospital to feed solid foods. Hooray! 

Kaleb, you keep fighting and proving all of the doctors wrong. Please show some of your cards though so we can get an explanation for your blood issues. I love you stinky butt. 

Inpatient #3

Kaleb has been admitted to the hospital three times in the past four months. I've always felt so "lucky" that Kaleb has been relatively healthy compared to other Trisomy or T9 kiddos. Unfortunately, Kaleb's medical conditions are just harder to understand I guess. He has really been testing the doctors at the hospital and his own specialists. It's odd to see doctors scratch their heads and literally tell you, "I don't know". Doctors are supposed to know everything, right? Right!

Here's a look at Kaleb's hospitalizations...
11/2011:
Taken to ER for swelling in both of his legs and high fever (104ish).
Labs were completed and it was found that Kaleb was severely anemic and had inflammation in his soft tissues
A bacterial infection was found however could not be located or determined which bacteria
The source of Kaleb's bleeding (anemic...losing blood from somewhere) could not be located.
Inpatient for 6 days
During this time it was found that Kaleb's bone marrow was not making enough red blood cells to keep up with the "blood loss"
Kaleb received his first blood transfusion

3/2012:
Taken to pediatrician for 5ish days of vomiting and diarrhea and told to go to ER
Went to ER, labs were done and found that Kaleb was severely dehydrated
Kaleb had lost around a pound and a half
Kaleb was inpatient for 5 days
CBC came back normal, no anemia or other blood concerns

4/2012
Taken to ER due to fever, swollen legs, and red-hot areas on legs
Labs were done and Kaleb was found to be anemic again
Kaleb's white blood cells, hemaglobin, hematocrit, and platelets were also ALL LOW (weird!!!)
Kaleb was moved after a day to hemtology/oncology floor due to concerns of Leukemia
Kaleb's bone marrow is not functioning properly again
WBC's don't look right
Bone marrow aspiration and biopsy completed, does not appear to be Leukemia
Doctors are completely stumped however promised me to continue care and find an answer

After these hospital stays I'm worn out, confused, sad, worried, and hopeful that an answer will be found. Kaleb's blood counts are all over the place on a day to day basis. When his blood counts go up or down every day, they go up by a lot or down by a lot. No in between. We will be following up with Kaleb's hematologist (an amazing man!) monthly, and will continue to get results from the biopsy, aspiration, and blood work throughout the next couple of months. Kaleb has stumped all of his doctors along with the pathologists that are trying to come up with results. These are the people that should know the answers, this makes me feel like I have even less control because how can I help my baby if they can't even help him?

I'm looking forward to some answers and ways to treat whatever is going on. For now Kaleb has an unknown blood disorder and I'm hoping that it's not something that can really hurt him or that needs to be treated immediately, like most blood disorders.